Date: 11.02.2010
From: Daniel Smith
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Subject: Reiters that lasts a day
Hello.. although I have never been formerly diagnosed with reiters, that is what I think I might have... periodically (perhaps once a month/6 weeks) one tendon or other (often a knee, sometimes a finger joint, sometimes a toe tendon, sometimes in the tendon in my forearm). The onset of the pain is very quick, I can almost not feel it one moment, then suddenly I am aware it is coming on. about 4-6 hours later.. (or in the middle of the night if I go to bed) it can become very painful, i.e. wakes me up. If it is a knee, it pretty much stops me from walking, I can touch the tendon and find a very specific area/point that is the sore bit... this is where it does not seem to follow Reiters... about 24 hours from the peak of the pain, it will be completely gone! The pain eases quickly (helped if I move it, e.g. struggle to walk if a knee) and about a day after the peek, it literally is completely gone... it might then be another 6 weeks, where I have no sympton what so ever... Has anyone else every experieiced such rapid recovery?
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Date: 11.02.2010
From: Jill
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Subject: Re: Reiters that lasts a day
Hi Daniel, Im interested in your Post as I have been officially diagnosed with Reiters Syndrome in 2002, I presented with a 'Triad' of probs, i.e. uretha, conjunctivitis and excrutiating pain in very Joint......sadly Reiters for me has been chronic, I Have the Gene HLA B27Pos, with Predisposes me to Reiters, I had food poisoning back in the 80s.....was misdiagnosed at that time....however, Reiters has now left me with Chronic Inflamatory Artha....some rhummys say I have R.A., treatment is same, Hoever,what interests Id like to know is Y u think U may have Reiters? sounds mad asking u this I know....U r right about the Initial onsest being very fast, and 90 people out of a 100 will get better, 10% with niggly pains, and my rhumatologist said that I, the other 10% never get over it.....it causes other issues, which it sure has, 7 corrective surgeries later and I still need Fusion of the spine....... Daniel may I ask Y u think U have Reiters? And y not just Arthritis as in Inflamatory artha, or R.A.? reason im asking is, when U get Reiters, thye diagnosis will be given to u, when U present with the Three('Triad) of health probs.....tht is how they know someone has it....and the fact that u have the Gene marker....... Now, there is a an Arthritis called Reactive Arthritis, confusing really, becos some Gps, will call Reiters,' Reactive Arthritis', this is due to also bugs, virus in the throat or gut, and also by STI unfortunately......anyway, ig u google it all, it will be clearer, its quite a complicated convo on here...... Also I hope U dont have it, but have U seen a Rhumatologist yet? U could maybe have Tendonitis, this is by no way less painful....I have Tendon Degeneration also, nitemare....and Disc degeneration Disease, sorry to bombard U with such a lot of rambling, But your post does interest me, as I have read only u and another person mention Reiters Syndrome...... I hope others in here will be able to tell u what they possibly think it sounds like, or could be, but we try and giver advise , if we can, but we always support ppl......look forward to hearing from you...tc Jill
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Date: 11.02.2010
From: Daniel Smith
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Subject: Re: Reiters that lasts a day
HI Jill, HI ther, and thanks for your posting... I have read quite a bit over the years on Reiters.. about the triad of problems etc.. the gene marker, but am also very aware there is no real positive test to categorically determine a diagnosis. The reason I think I have reiters is: The first presentation of joint/tendon pain was very acute, quick onset, and very painful.. it was in the two joints of my little finger... I was admitted to hospital (as it was red, swollen and there was no external cut or logical reason for it)... initially, the fear was a tendon sheith infection.. they kept me in over night, as aparently an infection in this tendon sheith can cause significant damage to the movement of the finger, which (as it was my writing hand) would have been bad news (I was only about 23 or 24 at the time). So, they decided to put me on intraveinus antibiotics, and decide in the morning wether to flush the tendon sergically.. miraculously, within 12-18 hours, it was almost completely better... so they did not obviously operate, and thought to keep an eye on it... I did then see a rhumatologist, who asked if I had had the conjunctivitis, or a UTI etc.. which I had not, well I migt have had a bit of conjunctivitie many many years earlier, as a school boy, but nothing recent. I didnt really think anything of it, and went about my merry way. THen, perhaps 6 months later, I would get a very painful tenson in the side of the knee. (I did not put two and two together in any way, and the first instance, I put this down to sleeping awkwardly on it, as - although very painful initially (and quick onset) cleared up fully within 24 hours or so... so again, did not really think anything. Then, over the next 13 years (up to date, I am not 38) I have had plently or individual episoded of various tendon pains, in lots of different places, knees, finger joints, flexor for arms, occasionally elbow, toes, ankles, occasionally under my foot. Each time, quick onset, incapacitating in the case oh knees, then clears up, and completely gone within about 24/30 hours... occasionally, they have lasted a little longer, which worries me, but this is not common... and even then, it will be milder and last longer, perhaps as lopng as 3 or 4 days, but no longer than that. I had food poisioning (salmonella) when I was about 18 (may not be connected).. I did have a UTI, but I think this was after my first episode when I went to hospital.. I took antibiotics (I was on holiday at the time), and it quickly cleared up.. I had epididymytis about 2 years after the initial onset. I had all the tests under the sun for STD's.. but all were negative, and I am/was not sexually promiscious. I did have a girlfirend at the time... who also then had all STD tests, and was also negative for all of them.. (so the Epidydymitis could also be a red herring).. SO you see putting these things together, has let me to think perhaps I do have Reiters.. The thing that makes me thing I dont is it goes away so quickly... and everything I have ever read on REiters states a flare up lasts 2-6 months, even longer in some cases... where as my flare ups last 24/36 hours. I have never seen a rhumatologist, or had the gene test, partly because it is not so bad it has led me this way (only bad for the 24 hours), and partly because even with a diagnosis officially, then what ?? sometimes I will not have any flare up for 3 or 4 months.. then when one comes, I might get 2 in a week, in 2 different places. I will google Tendonitis thanks for your posting... I hope my situation does not deteriorate, this is my only real worry.. but then I have had this for about 14 years, and it has not got noticably worse... a bit perhaps in frequency, but in suffering terms, it is very managable in the big picture, I dont have that much to complain about compared to most in this forum. (you included by the sound of things)...
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Date: 12.02.2010
From: Jill
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Subject: Re: Reiters that lasts a day
Hi Daniel Thanks for posting back so fast,came on to se if U had posted as I was interested in your answers....I do see where U r coming from, much more clear to me as to Y u wld think that!....Mind U, I think U deserve to see a Rhumatologist, even tho U say it does go away after a day or so, but blimey that pain is terrible isnt it? I am 49 now, and over the years, after my first was born especially I had episodes like U described, but becos I was told at the time by a Rhumatologist (lived in london then) he told me it was Non Progressiver Arthritis, so like u, got on with life, had a lot of good years, babies etc, and the Intermittent pain, but 2002 , wow that was a nitemare, know there isnt a test as such for Reiters, but the 'triad' onset and acute pain, that I beleive is how they diagnosed my case! was told at the time that it can 'burn itself out', was in hosp 6 weeks, due to come out after 4 weeks, and then got C.Difficle, that nearly killed me! didnt help the Reiters at all, reason I was told I got the C.Diff was becos during the first 4 weeks, they has me on 3 lots of different Antibiotics for 24/7 for three weeks, it killed the natural flora in the gut, and the bad bacteria that we all have and must have, Mulitplied....Bp went to 50/25, Intensive care, felt I was dying, anyway, came out two weeks later, so all in all 6 weeks in hosp, and I truly believe Daniel, that the C.Diff has made the Reiters Chronic....rhummy told me that nearly all Reiters cases, recover without further issues, some get odd days, and othes like me, well, its left me with such complicated health issues....Inflamatory artha, DDD, tendon degeneration now, but my other rhummy(there were two) said a year after coming out of hosp that I had R.A. as my ESR rose to 97, hopsitalised for ten days, then put on Methtrexate......now on Enbrel....... Daniel, I would urge u to see a Rhumatologist,simply so that he can rule out other things, also Y should U suffer those onsets, must be a pain in the butt? Also just want to say too, I had the STD tests , I was Mortified, becos I was Never sexually active, maried a Virgin and I was one too lolol.....I did get a terrible food poisoning episode few months after my baby was born, then terrible flu that affected my stomach, hubby at the time has the same, for me tho, seemed to last forever, and b4 I knew it, was in having two carpal Tunnel Ops....... even to this day, If i catch a tummy Bug, wow, am I sick, BP drops down to 90.....so Im obsesses with washing hands b4 I touch food, etc....... good to talk to U Daniel, next time(hope u dont get it tho) when that Onset comes on, see howe painful it is for u, Must affect ya life to some extent, think about being refered to a specialist.....good to chat, take care ok Jill
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Date: 14.02.2010
From: Daniel Smith
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Subject: Re: Reiters that lasts a day
thanks Jill.. Can I ask, Has your Reiters got worse then over the years... and from your first episode, how many years past when it was just a few episodes, that you could self manage, ive read your posts, and Im trying to understand if you had a period of many years when it was not really a big deal.. just painful for a few days or so... or did yours not present in this way. When you werre told it was non progressive Arthritis... were you also experiencing the rapid recovery that I do 24/36 hours...? and if so, how many years of this before things startd getting worse..? So you think getting pumped with the Anti Biotics really caused you many more problems, specifically with the Arthritis side (i.e. not just the onset of the C.Difficle.? Thanks for your postings. Dan
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Date: 15.02.2010
From: Jill
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Subject: Re: Reiters that lasts a day
Hi Daniel...
when i began getting joint pain, kinda randon, but painful enough to be refered, rhummy just said it was non prog artha etc, being first experience of this and being young, didnt think massively about it, talked it thru with my Mum, and we assumed as it was Non progressive, I decided to Not let it bother me, took anti inflams given at that time.....I didnt get the Onsets at that time at all.... if i had pain, it was gradual and then got worse for say a week or two, once went, no flare ups as such in between, wld be kinda now and then, say every few months, lots of times I put it down to sleeeping awkwardly, socialising far too much,tired with becos of having babies, getting up a lot in the night, that kind of thing....went thru years of bad back, again week or so, and nothing for months, or year or two, neck prob were the worst, again xrays reveald nothing years back, put it down to stiff neck....., Did not experience the rapid recovery as like U have.... .in 2002, My dad in jan was diagnosed with a Brain Tumour(lost my mum 2 years prev with Breast cancer) so all in all I was very stressed, my parents were my world, My Dad in 2002 was admitted to Kings college in london, I lived in Hastings(from Nov to Jan my dad lived with me, he needed care and wanted to be with me, was difficult as I new he was sick, then I got the call,that it was a brain tumour in the Jan 2002, he was then admitted to hosp, during this time, trying to bring up my very young family, the driving, and the limited time I could get to him in the week, was making me ill in general, tired, headaches etc, I wanted to be with him 24/7, so at weekends I stayed throughout till sundays, very stressful, I then had a very sore throat in end feb/ march , reallly bad, then got probs below(thort it was a women thing, like thrush, not that I ever had that prior) that was so painful, then my routine was as I said b4, Plus working 3 nites a week til 1pm in the morning, it was sad and stressful for me, becos we knew he was dying, he did not want to know, this became so hard to hide, all us kids talked and decided to not tell him, he told us always never tell him if he had anything serious, so we didnt, round about March, the sore throat, the sorenes below, and then I got a painful knee(almost overnight) could barely walk, then the other knee, then the conjunctivitis, saw gp, lots meds etc, and GP wanted to see me weekly, the Conjuntivitis got so bad, I couldnt drive, so hubby did that and had to re arrange child care(stressful) by this time, My dad was in a hospice, was due to see him that weekend, and that fri night, will never forget, I felt the pain arrive in my shoulder, within ten mins, felt it travel to my elbow, within an hour to my knees, then ankles, then it attacked the other side equally the same(all within 24hours I became bedridden) hubby rang the gp, took one look at me, becos by then, my eyes, the whites were full of Blood, and clots, I was admitted to hops 28th march, The pain all over was Unbearable, couldnt bear to be touched,purre agony! came out 6 weeks later! meanwhile My Dad died, I didnt comprehend much as I was so sick,they diagnosed me within 3 days of being in hosp, with Reiters, due to the 'three important markers' then all the antibitoics went up,Morphine and the like, was out of it 4 a month, In an Acute ward, still agony, but eventually controllled pain wise, was due to leave that day, body went into shock suddenly, and ended up with C.Diff, stayed another 2 weeks! intensive care etc,...so all in all, from the sore throat, quick onset of the below probs, and knne probs followed fast, pain until I got admitted, Daniel, I felt the pain physically traveling from joint to joint, frightening.......I think the antibs, did not help my Artha per say, but made me get C.Diff, altho that is airbourne, if ur sick, by god it will get ya, if the good bacteria isnt in the gut!.....so from the regular Non prog artha, was years of reasonable freedom, until 2002, I still get sick, flare ups, and on Enbrel etc, yet still my body is degenerating, enbrel helping the joints, but the soft tissues, i.e. tendons, discs those meds dont help, nothing can be done to stop the degen of those tissues, thats where the Reiters comes in, the Reiters attack the soft tissue, and if chronic enough, will leave u with Inflamatory Arthritis.........Please remember Daniel, each Reiters case is different, 90% will not get another attack, the other 15% get a flare up, the 5% like me, well its grappped me bad, as I still feel the Reiters is at work within my body, but the Inflam artha R.A.? is helped by the meds,....Please dont let this worry u, all our stories r diferent, I had to explain it to u like I did above, U needed to see Y I got sick, and that I Must have got a bug via a sore throat, hit the tum, bingo, predisposed to Reiters 2 due the defect marker Gene, mybe I caught something rotten in the hosp, who knows, all I want to say to u is, Please dont let my experience affect U, U must see a Rhumatologist, and let him tell U, if U have Reiters its very rare, lots ppl get ReA,(reactive Arthritis) and u dont have to have the Defect gene to get this, most get it thru food posoining, more common that Reiters...... I so hope U dont have Reiters or anything nasty come to that, but the best person is a referal....I dont want to scare anyone on this site, and rarely talk about the 'Reiters' side of things, but thats where I am today, on this ssite due to Arthritis......Daniel please reply back asap, as I want to know what U r going to decide, hope U tell me, that U r seeing your GP, for a referal...that wld be good news......by the way, I dont get Fast onsets anymore, they r more gradual....but I know my body well, and kinds know within a day, if its a flare up or not...... take care Daniel
speak soon Jill
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Date: 15.02.2010
From: KayJay
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Subject: Re: Reiters that lasts a day
Sorry to read your story Jill. I really believe that stress is a major factor in getting these illnesses. My Dad died in 1991 after surviving 9 months after a major stroke. It devastated my Mum, he had only just retired after working like a bloody horse for the Steel industry. She went on to show signs of dementia in 2000 and my sis and me had to deal with everything for her plus looking after our own family. It was dammed hard so I can sympathise with you. Since her diagnosis I have developed Diabetes / gall stones / Fibromyalgia and possibly inflammatory Arther [ still being diagnosed with this]. You feel guilty all the time - guilty for not being with a parent - then guilty not being with the child and vice versa. Something has got to give and it's usually your health. Mum is now in her 10th year of dementia but she is being looked after in the Nursing Home. So the pressure is off now but I remember those hard years still.
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Date: 15.02.2010
From: jill
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Subject: Re: Reiters that lasts a day
Hi Kayjay, agree with u there. think that is y my dad ended up with the Brain tumour, he cried every day for a year, I know this, even tho he didnt live with me at that time, he use to come down from london to see his grandbabies(he loved then so much) anyway, he creid like a baby for a year, everyweekend he stayed, he just couldnt stop, and he couldnt work, he was a Black Cab Taxi Driver, he loved that job, but did less and less, then went over to my sister who lived in usa at the time, stayed there for 6 months, and came home, we thort he had bad flu, I think his tumour was due to stress......dont ever feel guilty that your Mum is in a nursing home, she is deffo in the best place, they truly need that care that us as families cant give.....and Im so sorry to that about ya Dad, not fair is it! I try and not get stressed, light candles, incense , low lights at night, that kinda thing,does help a bit.....Hope ya coping at mo Kay, can I call U kay? Another question, regards the gall stones, do they give u lots of pain, if yes, where abouts? ive still got terrible pain, where the ribs finish, but in middle...pain is severe, takes my breath away, truly thort i might need to ring the paramedics last night, pain was that bad! feels like its an ulcer, or how I wld imagine an Ulcer to feel....tc Jill
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Date: 15.02.2010
From: KayJay
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Subject: Re: Reiters that lasts a day
Hi Jill sure U can call me K !! Gall stones started with immense pain in my back going through to my front at the centre of my right rib cage. Mum + Dad both had ulcers and they got pain on the other side [ I think ] and they used to vomit a lot. I don't do that but the pain was so severe I had to take very strong prescription only pain killers. The GP would only give me those on the condition that I went to hospital for investigation. I had the camera down the throat. It was not ulcers but the nurse said ask the GP for referral for a scan because she suspected gall stones. And yes there was 3 of the little b**gers !! The pain was more severe if I ate anything at night and it would come on so sudden and strong that it woke me up. So I try not to eat anything before bed now !! The surgeon said she would not operate because I was too fat. So I asked the GP if I could have anything else for the pain. They precribed Lansoprazole and they really work. However I should not be on them permanently but the GP just lets me have repeats Tee Hee. Been on them now for about 9 years !! and no mention of the op since. Jill I would tell the GP about the pain - for sure. I had quite bad pain just where you describe [ thought I was having a heart attack ] but the GP said it's arther of the ribs !! And it did pass after a few days.
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Date: 15.02.2010
From: KayJay
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Subject: Re: Reiters that lasts a day
Jill found a link to something called Costochondritis which is linked to Arthritis/Fibromyalgia at : http://www.emedicinehealth.com/costochondritis/article_em.htm I'm not saying it is that so best check with the GP tc xxx
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Date: 23.02.2010
From: Dan Smith
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Subject: Re: Reiters that lasts a day
Hi Jill, Sorry it has taken me so long to reply... have been away on holiday.. (snowboarding in France, very nice).. thanks for your reply, and sorry to hear your story.. it is quite scarey, but I do remind myself that everyone is different, and how their reiters presents.. and I dont even know if I have it. I think I will go and see my GP, the next time I have a flare up, so there is something for them to see... the problem of course, is by the time I get a referral, it will have completely gone again... Still, I have been taking photos now, so I can show those, which is something for them to go on. Anyway, im glad things have settled down for you. I will re post when I have an update.. but - as you know, there is no real test to be sure, either way.. still, a professional view has to be better than mine (and googles!). All the best. Dan
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